Just trying to see others point of view. I have come across great judgment from the support group in my area for not taking the traditional route with the medications but instead using Alternative treatments. My theory is it is a personal decision and one should use what works for them. I am just trying to see what others thoughts are on this and why they chose the route they did.
Thank you for the thoughts many hugs
Hi Tiana,
I think alternative measures are fine and can be very beneficial, as long as a good Rheumatologist rules out any possibility of autoimmune disease, through blood tests, x-rays and any other protocol at their disposal.
I'm in the 'whatever works club', but know from personal experience how difficult and time consuming it is to get the proper diagnosis even after years and years of Doctoring. Fibromyalgia is so similar in symptoms to so many autoimmune diseases, and so many autoimmune diseases are so very similar in nature.
http://en.wikipedia.org/wiki/The_great_imitator
I take may supplements in addition to my AMA meds, but have to list them each time I go to the Doctor, as some just do not mix with the meds!
Many of our members see traditonal medicine Physicians as well as Alternative/Holistic Physicians!
Wishing you well,
SK
I also think it is a personal decision. I have lupus and some other auto immune problems so I take some meds for that I also use alternative treatments under the supervision of my rheumy and pc. All of us are different and I thing different things work for different people I learned a long time ago to due what was best for me and not let others bother me if they do not agree with my way of doing things.
Hi Tiana,
The treatment that worked best for me was a Chiro. I also rely on massage therapy. I struggle with my weight. I've gone gluten free. I just didn't get good results or had too many side effects for the drugs. Fibro just hasn't had any good responses with the medical doctors. The alternative treatments have been the best for me.
I don't understand why people would judge you for using alternative treatments for your conditions. I don't think it's your theory but it IS a personal choice what type of treatments you seek because each person/body is unique and different. People with the same illness need different treatments based on their unique needs.
Many people seek alternative treatments because the conventional western medicine fail to treat illnesses. I quit taking meds because they were making me sicker. I now use alternative treatments with better results. I think many people here use both conventional and alternative, so perhaps you should leave the other group and move here! I've been to other sites (where people are just whine and complain about everything while making excuses for not trying anything to help themselves) and this group is much better than the others. :)
Hi Tiana,
I'm sorry to hear people are giving you a hard time over this. I agree with those here, it's a personal decision. Most of us seem to have a number of different additional/associated conditions/diseases which affect our treatment program. I personally go the more alternative/naturalist route. Most medications they've tried me on haven't worked, messed with my head/personality, and I seem more sensitive to side affects and/or their side effects just make you miserable in a different way. Not to meant there are a number of things that taking a pill or whatever just won't fix.
My parents are very much in the ball park of just take a pill and don't bug me anymore. And if I'm not doing it, than I have no reason to complain things aren't going well. I don't discuss my health with them and am polite when they bring "helpful" stuff up. They also live in a different state though, so it makes it easier to avoid them.
I think part of it is just the society we live in. Given the choice between microwave and a stove/oven. The first seems to do the job well enough and in a shorter time. The later though may or may not give better results takes longer and oft times a lot longer. We want answers and we want them now. We want to get back to our lives or at least get the most out of them as we can. None of which is bad, but like in my parents case I think it can make some people impatient or intolerant. Or it worked for them so it should work for everyone, which simply isn't true.
I don't know. I have a really good doctor that's one of the leaders/pioneers in treating FMS/CFS. He doesn't go the "traditional" route, but he does work with each patient based on what's going on in their lives and what they prefer. And he's been involved in research with a friend in the research field. Finding things like people with FMS often have a lower functioning thyroid and when given treatment that put their thyroid level a more "optimal" they improve. And that most FMS have a calcium interlining to their cells instead of magnesium. The traditional route by my understanding doesn't usually address either of those.
So yeah, it's your health go about in the way that works for you!
Good luck! *hugs*
Butterflydragon
P.S. I found a group here that for those seeking/discussing alternative routes. I haven't had a lot of time to go through it, but you might want to check it out.
Absolutely Wanda, my Chiropractor has kept me on my feet for years! I'd be lost without him, and many of the supplements I take, I get from him, including ALL of my vitamins!
We are all different… Should not judge. A support group should be what it says… Support!!.. Whatever you’re happy with and wish to follow… Then I support you!!!
I wish you well… Now where’s those blimmin pain killers!!! Lol!! X
BTW, we have a natural healing group, in case you are interested in joining and sharing some of your wisdom!
There are several very strong, but limited, studies (google Xi gong and fibromyalgia) in which 5 sessions weekly of hourly Xi gong sessions, a form of Tai Chi, greatly improved fibromyalgia symptoms in many ways. I took Xi gong briefly a few years ago in a casual way and enjoyed it but did not take it long or vigorously enuf to assess its effects on me. These are 2013 studies, though, and are causing me to try to locate practitioners of that particular style, not an easy task. The study leaders did not know if other forms would be effective, though it would appear that the "dynamic", rather than "static' forms of Xi gong are necessary. I recently went to one acupuncture session, which I found painful and expensive;research data, also have been mixed for this for FM. I am not returning. I do a vigorous weight/cardio combined exercise daily. It is difficult but helpful generally, though it does not address the severe neuro-type pain in feet, calves, thighs, that is my major nasty symptom. I will try meditation next, also.
Honestly, I've been off pain killers (and I mean all pain killers except an occasional celecoxib) for about a month now and it's been fine. I have my flare ups and my bad days, but I mostly just sleep through it if I can. If you don't NEED the traditional stuff...don't take it. The way I see it, you can cause yourself pain but you aren't causing yourself DAMAGE by not taking those pills (Unless you have underlying autoimmune, in which case disregard)...and the side effects are sometimes worse than the original symptoms. I've had issues with hallucinations, stomach ulcers, motor control issues, etc. If you have something that works for you, go for it. (and please share with the class...I'm always willing to try something new).
I have to stay on the gabapentin/anti-depressants for now. The US Navy owns my soul for a few more months and you can get in serious trouble for going off medication against doctor's orders. And most military docs are traditional...And I mean traditional like using stuff from 10 years ago. Le sigh.
Oh, hey, and try vitamins (the good ones...I was told/have found that cheap vitamins have a lot of extra additives that can make your symptoms worse) and yoga. Those two have gotten me through this month, and I do actually feel a bit better.
Tiana - I am so sorry you have had judgement on how you chose to handle your illness. I agree that this is a very personal preference and we all have reasons for why we handle our symptoms and especially our pain in certain ways. Personally, I would love to know more about what has worked for you. I was diagnosed in 1991 and was ill long before that and I have tried many things over the years, most of which has not worked for me. For me, narcotics are not an option for many reasons and most of the prescriptions have only had so many side effects that they are prohibitive. We all have to do what we can to make the best of this life and the only thing for sure is that we are all affected differently and the symptoms are many and varied. As far as I know about this support group, conversation is always welcome. As long as a member is not selling something or being disrespectful then no topics are off limits. Looking forward to hearing more.
Sending Big Hugs!!
Linnie
Hi. These support group always are so positive and redpectiveful to me too. Sorry you had a bad experience. It seems we all are looking for answers and I think most of us would prefer alternative treatments but we have not found something that really works. I have tried many things and continue to seek natural healing. But, the pain is too great. I hate taking meds. Please share what works for you. That’s why we are here. To support and share. I hope you feel better. And I hope what ever you are doing works for you.
Good luck and don’t give up.
Elizabeth
I wonder what people think of as alternative? John of God in Brazil has thousands wait daily for him or his workers to do surgery or just touch people. He does not charge cent! Would you go to someone like him? I sure believe his heart is in the right place!
So when ones says they believe in alternative treatment it can be so varied that goes from stuff most of us would try like Bach flower remedies to standing in freezing ice water and drinking urine..which i would not do, sorry. Yes, this is really offered where i live and the charge is few hundred dollars! I live near a mountain many believe from all over the world will and does heal people. One of the 7 Sisters. Sure to some of you that sounds very strange! It will not hurt my feeling if it does.
I do not think that low dose naltrexone or vitamins are consider alternative even by most doctors...so what is alternative and do you have limits? I personally think people have the right to do what they believe might help no matter how crazy i think it might be. I do kind of get upset when i meet some of the people who are behind these healings and realize it is scam. Do you warn others or figure they have to learn on their own and/or possibly offend them?
But back to the LDN..i looked it up and sounds promising. What it did not say on few sights i did read about if it was scheduled drug like suboxone which is similar to it. Can you get refills?
I was diagnoed with Fibro in 1991. Back then, so many doctors believed it was in your head that I was met with some resistence. It was even worse that I am male as 90+% of all people with FM are women. After a couple of years trying everything from trigger point injections to elavil to acupuncture, etc., I finally made the decision to stop seeing doctors and stop taking meds for my FM. I had educated myself on FM and knew that the key is movement, exercise, getting a good night of sleep, education about FM and being around others with FM so we could bounce ideas off each other.
That didn't end my FM but it did offer me freedom to get back to my life. I went to PT twice a week which included massage, moist heat, e-stim, ultrasound, stretching and working out the kinks. Later on, I got neck and back adjustments by the chiropractor. When I had a bad FM flare, I learned to breathe through it. I would also. on occasion, take a muscle relaxer (at the time it was Soma - which is essentially a quaalude - unfortunately, I devloped an allergic reaction to soma and can no longer take it).
In terms of alternative treatments, I think I have tried most of them - everything from Traditional Chinese Medicine (TCM), cupping, herbal therapy, homeopathics, massage, meditation, three different methods of acupuncture, chiropratic and biofeedback. I even tried a hypnotist.
For me, what worked/works best is massage, moist heat and movement - the three m's.
Hope that helps.
Marc
I have run across many people and doctors suggesting I try many therapy treatments including: Massage therapy, vitamin therapy, water therapy, different medications with side effects, keep going to specialists and getting nowhere, acupuncture, physical therapy, etc......
Ok first of all ....the treatments listed above all cost money!! If you are disabled and waiting for SSI/SSD or whatever you don't have the extra money to spend. Insurances usually do not cover some of the therapies listed above! It is even hard to pay a co-pay to see a doctor when you have several bills to pay or to buy food. It is a horrible situation to be in. Thank God I have my fiance who is helping me out as much as he can and my oldest daughter who is paying a few bills for me. When my GP suggests something to me..I say to him that I can't afford it and I get a look. Well you know what Dude I don't make over $100,000 a year! I am starting to really hate doctors!
Anyway, sorry for the rant. I just wish I were healthy and could work. I lost my career and a normal life. I hate being in pain all the time or stoned out on painkillers!
Linda,
I understand. I really do. Like you, I lost my career, the money that came with it and eventually my wife. I will tell you, if you are fortunate to have just fibromyalgia, it is managable. After two years, I returned to work, resumed my place in the company and rose up to become VP in charge of six departments...all while having fibro, commuting and hour and twenty minutes each way and bringing my daughter into this world.
It wasn't until I developed Rheumatoid Arthritis on top of my fibro that I was forced to stop working and go on disability. There is a common sense appraoch to dealing with FM that most people don't know. The key is movement,. Think of your body like a sponge. When you wake up in the morning usually after a bad night of sleep, your sponge is dry. Have you ever tried bending a dry sponge? When you move, you get your blood flowing and you wet the sponge. Bending a wet sponge is no problem. Now, I know that moving is often the last thing you want to do but it is the best thing you can do. Don't go crazy at first. Build up.
It also helped me to know that fibro is not progressive meaning that I had already experienced the worst FM had to offer and I got through it. If I did that once, I could do it again.
I wish you the best of luck.
Marc
My personal feeling is to go with anything and everything that works. I am on most of the suggested meds, although I have decreased the dosage since beginning acupuncture and reiki and another treatment that the clinic calls Advanced Allergy Treatment. And my current rheumatoligist is a big fan of exercise--she says some of her patients control their fibro with exercise alone. I wouldn't quit my medicine at the moment--but the acupuncture, etc., has done wonders.
Madeena Nolan
Marc,
The advice you give is right on! I also say if people can use a physical therapist do...they will show you what is safe. You will hurt or be sore but what i can say is you might just be surprised how much better you will feel even in few weeks! If you do not have PT..start very slow, very, very if you have not worked out at all. I think all should most likely talk to your doctor first as precaution.
Everything I have read about most diseases and what helps the most is exactly what you said...only thing i add is nutrition but just could be obvious! Movement, exercise, deep breathing and meditation..oh i also might add something you truly enjoy that relaxes you...art, gardening or listening to music while you move. Sorry..you inspired me and gets me excited!
Linda i totally agree that many people charge too much. i use to teach water therapy class for arthritis and it was free or you could donate which just was for pool upkeep. Same is true for many meditation and deep breathing classes ...or you can go to library and get a video disc! Also on some TV channels and online, (ck out YouTube) now teach it as well as other things like Tai Chi! But you might look at your community classes, senior centers...they often have free or where you pay what you can afford.So please try to find a free or very inexpensive place...if you even live in moderate size town..sure you can find a place. Even it is say price...ask if they have sliding scale or rate for those on disability, lower income..however you would like to word it.
One thing...you should not feel 'high' taking narcotic pain killers. Please call either your doctor or pharmacist ASAP!! It is very possible that you are having reaction or one of the other drugs you taking is not one should mix with your pain medication. Sadly many doctors either do not check what other doctors prescribe or do not really care and prescribe drugs they should not to those on pain medication.
Heath ledger is excellent example. He was on pain, anxiety and sleeping pills. all were prescribed and an otc drug if i remember right.. Lethal dose of prescription drugs was his cause of death. Many doctors give this exact reason why they will not prescribe pain medication because people just die while on them. But thing is all my Pain Specialist have me sign a paper stating not to mix any of the above drugs...i can lose privileges of having them as my doctor if i do. So why do some follow those rules and not all doctors? Please call and have them make sure you are okay and safe!
Thanks Marc ..you inspired me to keep trying and working towards my goal...off my pain patches or low as i can go...but off them is my goal!! Cupping was only thing i do not think i have not tried but not sure what it is either...will check. I am very cautious about TCM...i want to know what i am taking!
I agree about what works best...though i am just about to try actual massage again..it use to hurt me too much ...but this new person promised he would not hurt me and has worked on fibro people. Plus, he knows some other body work he like to try...let you know how it goes . Have you tried epsom salt baths?...seriously no matter how severe the pain...as long as water is hot, it truly works!!
Thanks to you both! and others who have posted...inspiring for me to push ahead!!